"Wow, mom hid Alzheimer’s!" - a chat with Hillary

Hilary: 0:00

I remember having conversations with her saying, mom you may want to just go to the doctor and ask about your memory. I just remember having like little tiny hints. Nothing I was really concerned about. Nothing that I really thought we've got to go now. And then she fell and hurt her her back. And I took her to the doctor, and we're sitting there and it still didn't even cross my mind about anything. And the doctor started with, do you know what year it is? And she gave the wrong year. And my mouth almost fell off, like what?

J Smiles: 0:33

Wow.

Hilary: 0:34

And then the rest of those questions they asked whenever they go to the doctor, you know, what month is it? What, you know, what season is it all this? She didn't know a lot of the questions and I, it was like a brick fell on me. You know, it was just, even though I had been telling her maybe we should go to the doctor about your memory. And let's just see, I noticed like little things. I think she was able to hide it from me for a really long time because she lived alone.

J Smiles: 1:02

Parenting Up, caregiving adventures with comedian J Smiles. It's the inte se journey of unexpectedly be ng fully responsible for the w ll being of my mama. For almos a decade, I've been chipping a ay at the unknown, advocating or her, and pushing Alzheime 's awareness on anyone and anyth ng with the heartbeat. Spoi er Alert- I started comedy beca se this stuff is heavy, be re dy for the jokes. Caregi er newbies, OGs, village memb rs trying to just prop u a caregiver, you are in the ri ht pla

Zetty: 1:33

Hi, this is Zetty. I ho e you enjoy my daughter's po cast. Is that okay?

J Smiles: 1:45

Today's episode- Wow. Mom hid Alzheimer's, a chat with Hillary. Parenting Up family, I am so excited about this particular interview. This lady had me at hello. She was laughing so hard at my jokes that I said, Oh man, I've got to have her on the show. I've never met her in person, but that's what it is to be a caregiver. We are joined at the heart. When you have a loved one that suffers from Alzheimer's, you are immediately kinfolk, your kinship. We don't need a DNA test. Your mama has Alzheimer's, you're related. Welcome, Hilary to the Parenting Up Podcast. How are you doing?

Hilary: 2:38

I'm okay. How are you doing?

J Smiles: 2:40

Hey

Hilary: 2:40

Thank you for having me.

J Smiles: 2:41

Of course. Other than the fact that I wish we had met under different circumstances. I'm doing okay.

Hilary: 2:49

I had to actually nod when you were saying kinship, you know, and you're saying you knew you're immediately sisters. I'm like, you know, that's right.

J Smiles: 2:56

Yeah.

Hilary: 2:56

If you haven't met someone new, there's that bond right away that you're like, Oh yeah, me too.

J Smiles: 3:00

Exactly, it's the, it's the sisterhood that nobody actually wants to belong to, but it's an immediate understanding. If you say, Oh, really? You're a caregiver. Oh, for your mom? Oh, she has Alzheimer's. Like it, boom.

Hilary: 3:17

Yep.

J Smiles: 3:17

Oh, goodness. We met on a social media platform called Clubhouse. I was the panelists talking about being a caregiver and you were sharing some pretty humorous stories. And everyone is not always willing to see the lighter side of caregiving. And I recall being blown away, that you could have such an outlook. And that was the first thing that made me say, let me write her name down and try to contact her and say, Hey, that was pretty cool. Let's talk offline. And so thank you so much for willing to be on the podcast.

Hilary: 3:58

Of course.

J Smiles: 3:59

Let's dive right in. I know your mom is still with us on Earth.

Hilary: 4:05

Yes. So we can talk about her in first person. Tell us a little bit about when your mom started to show signs of a decline? How did you know, hey, this is a little bit more than mom can't find her keys? You know, it's it's a good question, because I've actually had asked myself that question a lot because she lived alone. I don't know. I remember having conversations with her saying, mom you may want to just go to the doctor and ask about your memory. I just remember having like little tiny hints, nothing I was really concerned about nothing that I really thought we've got to go now. And then she fell and hurt her her back. And I took her to the doctor and we're sitting there and it still didn't even cross my mind about anything and the doctor started with, do you know what year it is? And she gave the wrong year. And my mouth almost fell off, I'm like what?

J Smiles: 5:02

Wow.

Hilary: 5:03

And then the rest of those questions they asked whenever they go to the doctor, you know, what month is it? What, you know what season is it? All this. She didn't know a lot of the questions and I, it was like a brick fell on me. You know, it's just even though I had been telling her maybe we should go talk to the doctor about your memory. You know, Let's just see. I noticed like little things. I think she was able to hide it from me for a really long time. Because she lived alone.

J Smiles: 5:30

And how long was she living alone as an adult? Like I mean?

Hilary: 5:36

Oh, my goodness.

J Smiles: 5:36

That's an odd question.

Hilary: 5:37

Twenty.

J Smiles: 5:38

How long was she living alone?

Hilary: 5:40

Oh, she's been living alone since since her divorce and I was in my twenties. So probably 20 - 25 years.

J Smiles: 5:47

Oh, wow. Yes. So then

Hilary: 5:48

Oh yea.

J Smiles: 5:48

She, her coping skills and her ability to manage is

Hilary: 5:55

Yep

J Smiles: 5:55

Probably superhuman.

Hilary: 5:58

Yep.

J Smiles: 5:59

Her ability to hide things.

Hilary: 6:02

Oh, yeah. And you know, of course, once she's diagnosed then her friend started telling me, Oh, you know, I noticed this little thing, or oh, I noticed that little thing. I was wondering, but none of us saw it, you know, in the depth that it was until she got hurt.

J Smiles: 6:18

That right. I remember that happening with my mom. It was only after the diagnosis that her, my mother was still working. It was after the diagnosis that several family members, several of her staff members said, well, you know, J, a couple of years ago, it was that one time, and I probably had somewhere between eight to twelve people give me one or two instances of my mom doing something very out of kilter for her. But if you add them together, it was like 30 instances. But no one had ever strung them together.

Hilary: 7:01

Yeah, you just don't think. Well A, you never want to believe something like that.

J Smiles: 7:04

That's right.

Hilary: 7:05

So you keep no, no, no, it's fine. I'm sure it's fine. I'm sure it's a little and I don't know what your mom so you're just so used to being around and I don't even know what the answer is. I just know that even though I had noticed little things, it still hit me like a ton of bricks.

J Smiles: 7:21

Understood. How old was she then when she hurt her back?

Hilary: 7:25

She was only 74.

J Smiles: 7:26

Right

Hilary: 7:28

Yeah.

J Smiles: 7:28

And she had been living alone and managing very well. So was she?

Hilary: 7:32

Yep.

J Smiles: 7:33

Does she have to have back surgery?

Hilary: 7:36

No, no, she had some compression fractures in her back so they gave her a brace and she was able to rest at home.

J Smiles: 7:44

Okay, so then, as she started to rest from home is, is was she diagnosed right at that time or did it still take a little bit for you all to notice, okay, we really got to dig in deeper?

Hilary: 7:58

As soon as she started answering not knowing what year it was, and things like that, I was much more interested. Not interested, yhat's the wrong word, much more concerned. And that's when I started with all the doctor's appointments. And I mean, her her primary care said, we need to look into this. And for us, it was a little bit of a long journey because some of her blood work was coming up funny, too. So there was like the slight chance that maybe it could have been this other thing and not really Alzheimer's. So she had to go through all these tests and do all these things and she's in pain with her back and it was just it was a nightmare for a while.

J Smiles: 8:36

OMG, don't you hate that? I remember being infuriated. I was like, listen, I don't know what the hell is going on but I need somebody in a white coat to know more than me. And the number of times initially they told me we're not sure. I understand it's not their fault and that medicine is an art not a science. But when I was in a panic, and I'm thinking I need you to tell me number one, like is my mom on some rapid decline that she could be gone in 10 days? Or you know, is it neurological or is it cancer? Or you know, is it diabetes? What is it? Like it, oh, I just remember it being unnerving. So you, what you're describing, unfortunately is so familiar when dementia is involved.

Hilary: 9:29

Yeah, cuz they will, again, you want to go down every single road you possibly can because you don't want it to be Alzheimer's.

J Smiles: 9:36

You don't, because, because

Hilary: 9:37

I'd rather have it be cancer. I'd rather have it maybe we could cure it. Eveyrthing else has a possible cure. Right because there is no cure. The Alzheimer's road keeps going and going and going. There is no sign that says stop here, here's dom medicine Yea

J Smiles: 9:51

Or here's a surgery, right? Yep. So how long did it take, was it like weeks, months a year?

Hilary: 10:01

It's all such a blur. So I was, I would say months.

J Smiles: 10:05

Ok.

Hilary: 10:05

We found a phenomenal neurologist. I don't know if I'm allowed to say his name or not.

J Smiles: 10:11

That's up to you.

Hilary: 10:12

But that's, Dr. Lewis.

J Smiles: 10:13

Absolutely.

Hilary: 10:13

And so okay, Dr. Lewis, he was just phenomenal. And he ran all the tests that needed to be run and he just walked me through it all. He made me feel confident that when we made the final diagnosis, well not we, when he made. You know, when I heard it.

J Smiles: 10:30

Well, you were involved.

Hilary: 10:30

Well, we were there.

J Smiles: 10:31

Yea. It was a team effort.

Hilary: 10:34

When the final diagnosis was made, I knew he had unearthed every other possibility that was out there and we were, unfortunately, stuck with this. But

J Smiles: 10:45

Was your mom aware enough to realize. Hey, I have Alzheimer's?

Hilary: 10:51

Sometimes she would go in and out. I mean. I remember one night she was, so she was staying with us for a little while at the time, she refuses to move in with us and that she's even now still refuses to move in. And she, I think she does remember her mom. And I don't think she wants to do that to her kids, which I've asked her to move in and she still won't. But she did stay with us for a while and I do remember sitting in the guest room, and we were both sitting on the bed. And I remember her saying to me, I know what's happening to me.

J Smiles: 11:23

Oh, wow.

Hilary: 11:24

And that was just heartbreaking, you know? And it was just a glimpse, because most of the time she would you know ignore it. No, I'm No, I'm fine. No one this. She was convenienced she had a stroke and that's it. But that one moment sitting there when she said it was like she knows, she really knows

J Smiles: 11:41

Her mother had Alzheimer's?

Hilary: 11:44

My grandma had dementia. I don't know if it was all Alzheimer's but she definitely had dementia. The amount of people who have come up to me and say, oh my grandma had that or, oh, my granddad had that. I know, they mean well and I know they're trying to relate and I know they've seen some of it, but they have no idea.

J Smiles: 11:59

Right? Agreed.

Hilary: 12:02

What your parents shield you from when it's their parents.

J Smiles: 12:06

Correct.

Hilary: 12:07

I'm now learning, like I need like, parts of it with my grandma. But my mom shielded me from a lot of what was going on. So I want to tell them, like, just get ready, because it's not what you think.

J Smiles: 12:19

That's correct. That's correct.

Hilary: 12:21

Yeah, I take it. I know they're trying to be helpful and I don't take it badly at all. It's just it's not helpful either because they don't know.

J Smiles: 12:29

You're just not aware and then it hits you like a ton of bricks when you are in the copilot seat or the driver's seat so to speak.

Hilary: 12:37

Right

J Smiles: 12:38

Right. With your mom, you said she has refused to move in with you because you remember what happens to her mom. What did her mother, your grandmother, live in the same city where you all are, so did your mom see a lot of that decline?

Hilary: 12:52

Now my grandma lived in Florida.

J Smiles: 12:54

Ok.

Hilary: 12:54

And we live up in the northeast, and, but my mom would go down a lot. And then towards the end, my mom basically moved down there for, you know, months at a time and did take care of her. She had other kids nearby, but my mom was the youngest of all them and she went down, moved in and took care of her and so she saw, yeah, she saw it all.

J Smiles: 13:15

So how long has it been since your mom was diagnosed?

Hilary: 13:21

About two, two or three years?

J Smiles: 13:23

Two or three years

Hilary: 13:23

Somewhere in there yeah.

J Smiles: 13:25

And when it came time to decide, alright, she's not going to live with me, no matter what I say then what did you do? Is she in a facility, is she had her home and how did you all figure that out?

Hilary: 13:41

Thankfully, she got long term care insurance.

J Smiles: 13:44

Woohoo, hold on one second. Hold on. We like to celebrate things here at the Parenting Up Family.

Hilary: 13:59

Oh, my goodness. It's...

J Smiles: 14:00

Wow. When did she do that?

Hilary: 14:02

Yea.

J Smiles: 14:02

That is, that's extraordinary.

Hilary: 14:03

I don't even know. I don't even know. I don't even care.

J Smiles: 14:06

Good job, mom.

Hilary: 14:08

She is in a, there were four of them and she's the only of the four who ended up having Alzheimer's. The other three kids did not so it's, I know it's a genetic thing but it's not definite. But at some point she got long term care insurance and, oh my gosh, it's made all the difference in the world.

J Smiles: 14:25

Phenominal. So did you all have any issues? Because I've heard sometimes that the long time, the excuse me, the long term care insurance may not be as clear of how to extract the usage as you want. Did you all have any issues saying, Hey, mom needs it now was it was that a long and arduous process?

Hilary: 14:52

Well, I went to college and got my degree in long term care insurance so it was really easy.

J Smiles: 14:58

See what I'm saying guys, told she was funny!

Hilary: 15:02

No, it's the whole thing. I mean, you have to figure out because they only cover a certain amount and they only cover a certain amount per day and up to a certain amount and different things for different facilities and different, you know, we looked at everything. We looked into, she was too young for memory care. Everybody else in memory care was like in their 80s and she's only 74 and she could feel it. I could see it in her eyes and I couldn't, I couldn't do it to her. So in the long run, it was great getting and once it got into motion, it's very easy to do. But no, it was..

J Smiles: 15:34

A nightmare. It's another nightmare.

Hilary: 15:37

It wasn't a nightmare but it wasn't easy by any means.

J Smiles: 15:40

Yeah. It's cool to know that you have long term care insurance and she's home. I haven't heard a lot of options of that so that's nice to know, so Parenting Up family take note of that. Typically, I've heard of long term health insurance and there is involvement with a facility of some kind, but that's cool.

Hilary: 16:07

Well, I will. Sorry...

J Smiles: 16:09

No, no, that's right. So you said she's at home with

Hilary: 16:11

She's at home but we o, I want to be clear, we do t? till pay a good amount of oney. She pays a good amount of oney out of pocket because the l ng term care insurance only c vers up to a certain amount p r day and even the cheapest li e-in aid is still about 30 or 4 more per day. Doesn't sound li e a lot but when you add tha up per week, per month, per yea , it adds up to a lot. So it is ot always a guaranteed opt on if you get long term care ins rance that you can stay hom . That being said, there's no ay we can afford a facility wit you know, my brother and I, li e I have two kids he's got, h w are you going to afford that k nd of money in a facility? And i would cover a facility if we h ve to move her into to some k nd of memory care or something l ke that.

J Smiles: 17:04

Understood. But I picked up on what you were putting down. Like they say back in the day, I remember my grandfather say, I'm picking up what you're putting down. On you noticed the change in her spirit or her energy and you couldn't

Hilary: 17:17

There is now. do that to her, at least at that time because she was, her awareness was high enough and she was alert enough that having her in a memory care place or facility at that time when she was initially diagnosed, would have been too much. And that is what I can recall with my mom and actually still now my mother, while she cannot function on her own, she is very upbeat, and she's very engaging. She needs one on one attention all the time. She needs to talk to somebody, she wants to hug. She wants to say, hey, darling, how are you doing? Well, what are you eating? Oh, I like that shirt. Now, you might not even have on the shirt, you could have a bra, but the point is she wants to comment and say something to you, and she needs you to talk back. So if she were in a room by herself or speaki g with like a like, if she had a roommate who was inaudible, I don't think, you know, that l ck of interaction could be v ry damaging. And I, like you, am unwilling to take the ri k because I don't know if there s a way to turn it around, y u know, to say, Oh, we tried i so let me go get her and the because you don't know how t unravel once they unravel wha that dark tunnel may be wit Alzheimer's when you do tha kind of thing. So how did you mom take to locating this par icular live-in aid? Was, is ther one? Is there one person tha stays with her? Or..

J Smiles: 19:11

Ok.

Hilary: 19:12

But finding a caregiver is one of the hardest things that I've done. And I've been through a lot in my life. I don't say that lightly.

J Smiles: 19:20

Hold one second.

Hilary: 19:21

Yeah. More cheers?

J Smiles: 19:27

I agree completely. I think it's, it's like finding a babysitter for your newborn.

Hilary: 19:34

That's so funny. I just actually said that to my friends. I said, I finally realized part of what's so hard here is that, you know, when everyone jokes you eventually become the parent and everything. But they don't talk about the other side of it like, of being the child. So I am now trying to care for what is a child but like my mom's not just my parent anymore, she's my child and the feelings that go along with that. It's not just the role reversals in terms of like the the logistic things you do, it's the emotional reversal.

J Smiles: 20:07

Correct.

Hilary: 20:07

Where all of a sudden, when your child's little, she's home and you're taking care of her and you're the one taking care of her.

J Smiles: 20:13

Right.

Hilary: 20:13

But now that's not the case and finding someone and my mom is stubborn, she is really stubborn.

J Smiles: 20:21

Was she...

Hilary: 20:21

She tried...

J Smiles: 20:22

Was she always stubborn?

Hilary: 20:23

Yes

J Smiles: 20:23

Okay, so she that's not a new that's not new from the disease has any part of her personality change that you think from the disease?

Hilary: 20:34

She got really angry and really nasty at first. Like, fired people every day. Called the cops. This is my house. You don't literally actually call the cops when threatened to all the time, call the cops.

J Smiles: 20:49

Really, she really knew how, she got 911?

Hilary: 20:52

Oh yeah, cops came to the house. I had to talk them through tell them what was going on. She was not gonna have anybody in her house. She, that was her house, and we had to listen to her. I mean.

J Smiles: 21:06

A little bit. That's true. It is her house. You have to listen to her. But calling the cops she's like, hey, this person is unwanted, an intruder and put them out. Ouch, ouchies.

Hilary: 21:18

Those were kind of some of the funnier things. Some of the more hurtful things is I'd literally have heard her say, I don't love you. Things like that, that would just you know, it's heartbreaking. You have to remember this is, she get mad. And Mom, I love you. I don't love you right now or I don't love you. Alright, you know, things like that. And actually, once we put her on a medicine it helped a lot. So she seems back after the medicine, she seemed more backed, or at least most of the time, kind of an even keel.

J Smiles: 21:50

If you don't mind sharing with which medications do you feel were most beneficial?

Hilary: 21:56

For her it was the Seroquel.

J Smiles: 21:57

Okay.

Hilary: 21:58

It made a huge difference. It just finally, it took that the anger and the bitterness, you know, just the blowing up, you know, I mean, we all have, but it's it's the nastiness, that's the word.

J Smiles: 22:12

Right.

Hilary: 22:12

It took the nastiness away, she just got really nasty.

J Smiles: 22:18

That's important.

Hilary: 22:19

Yeah

J Smiles: 22:19

It's important and thank goodness that her doctors stayed on it and that you and the caregiver, your team, whoever was with her on a daily basis that you all kept giving the feedback until they changed their medications to figure it out. Oftentimes, unfortunately, in mainstream world, I won't just say America, Alzheimer's can be stigmatized as just this disease that makes people like angry, like, old angry people who are just like awrg-awrg. And so then, excuse me, people don't attempt to understand what the sufferer may be thinking or feeling and so then, they just, they, the caregivers become combative back or bit assertive or aggressive and don't even attempt to locate a change in medication or potentially a change in diet or a change in environment or sometimes. Hell, it could be the caregiver or the environment or the facility that I've advised some people that I know like, Hey, have you? Are you sure that someone is not agitating the hell out of them at this particular facility that you are paying a million dollars a minute for? Maybe they are really screwing with your dad, you know, because he's mad all the time, let's go and see if anyone is poking at him. So that's fine. I'm so happy to hear that. I remember early on, we definitely had to tweak Zetty's medications. It probably took close to a year to really find that sweet spot, you know, playing up and down with dosages and moving medicines in and out because you have to, you have to go slow, right? It's like cooking a pot of gumbo, you got to put a little this on a little of that, lagniappe.

Hilary: 24:18

For us, actually, the medicines was pretty easy that she took the Seroquel right away.

J Smiles: 24:22

Yay.

Hilary: 24:23

The doctor was really fast with prescribing it. That was a blessing. We had enough other challenges that I think God was been nice to me.

J Smiles: 24:33

That's so beautiful. That is so beautiful. So you said Is it just you and your brother in terms of siblings?

Hilary: 24:39

It is. And my brother lives in Manhattan. So he's a couple hours away and so he is, especially, I will apologize to the men out there. So I'm gonna say this, but for a guy he's actually incredibly involved. A lot. I know a lot of the men...

J Smiles: 24:55

I'm gonna give him cheers.

Hilary: 25:02

Which is, which is really helpful. I'm having the support, you know, and my brother and I really close, which is helpful too. So we agree on everything and and it's been really helpful that he has told me he's like, you're the one there, you're the one seeing it so I'm, I defer to you. I'm here to give advice and to talk things through but you're the one there and I'm going to trust you and defer to you.

J Smiles: 25:22

That is a big deal.

Hilary: 25:26

It is, and it's wonderful and it, it's great. And then it's a little what's the word? A lot of pressure to then all the decisions you're making. You're like, Oh, no.

J Smiles: 25:36

Am I doing this right? Yes. Because that means if something goes wrong, or you like, okay, I have the final say so but what if I don't get it right? Oh, man.

Hilary: 25:49

Yeah.

J Smiles: 25:50

Correct. That is a pretty tall order. What's something, some funny, some additional funny experiences or moments along your caregiver journey that come to mind?

Hilary: 26:05

Probably the best one most recently, and I'll preface this with you're only gonna find it funny if you're willing to laugh at the situation.

J Smiles: 26:12

Of course

Hilary: 26:12

But my brother and I, we do so she was in the hospital and my brother, it's, you know, it's sundown. She gets worse at night and he did something and she called him stupid. And he said, Mom, don't call me stupid. And she said well then stop acting stupid. So, you know, in the moment, they have their full wits about them. You know? It's just she might she won't remember it three seconds later that she said it but if you could laugh at stuff like that..

J Smiles: 26:43

Right?

Hilary: 26:43

That's what gets you through.

J Smiles: 26:44

She's like, well, I mean, look, dude. It's kind of on you, right?

Hilary: 26:50

Yeah

J Smiles: 26:50

The way I referred to you is completely in your control. You don't want to be stupid? Stop acting like it.

Hilary: 27:01

Stop acting stupid. I'm won't call you stupid.

J Smiles: 27:05

Absolutely. How have you gotten through internally, those moments like when she's said things to you, that were hurtful in the moment? I love you, ma. Well, I don't love you right now.

Hilary: 27:20

Yeah.

J Smiles: 27:20

What do you do in those moments? How have you handled them?

Hilary: 27:25

Well, honestly, the first thing that happens is you start to wonder, does she mean it? Because as much as you know it's the disease, any mother daughter relationship is never perfect and you butt heads and you go through stuff. So you know, your first thought is, Oh, my gosh, this is, it the truth coming out now?

J Smiles: 27:46

That's right.

Hilary: 27:47

You know, is this, so as much as it's just the disease and everybody will tell you that. But there's still that little part of you when she says those mean things, now, maybe not the love part because you know, your mom loves you for the most part. But it's the other nasty mean things that she'll bring up and it's, you do start to wonder, is this the truth? Is the truth coming out? I don't think it is, you know, but at the time, I can't say I didn't wonder about it. You know? I think as time has gone on, I realized it wasn't the truth. It was her being nasty. It was the disease. But for anybody who's new to this, that is the first thing you're going to wonder and it's totally normal. Past that, a lot of prayer. I have very

J Smiles: 28:21

It's totally okay. All caregivers stories are welcome good friends that have, were and are wonderful and I think probably one of the biggest things is finding other friends who are in the same boat. My mom is home right now from the hospital and she's mad as a hornet because she called and she was not going to stay there one more minute, she wanted to go home. I was thinking to m self, mom, you are home. Okay, o she is home so how can I ex lain her that she's home? nd I called one of my best fr ends and I was like, what do do? She's like, why don't yo put her in a car and driv her around and just bring her back home and make her think he's home? I said, you know hat? I would but I have my frien Lisa, who went through the same thing. I gave her the same advi e. She said yeah, we did that. W drove around then she wouldn't et out of the truck. So now we have a whole another issue. She' sitting in the truck outside her home saying that's not my home, I'm not going to go in. So it's just having other peop e who are going through it to t lk to you to laugh about and eople who can laugh about the, I m going to tell the story and hope it's okay then I'm t here.

Hilary: 29:36

No, I mean with the person. I'll have to check with

J Smiles: 29:38

Oh yeah, well, hey don't maybe don't say the name them.

Hilary: 29:41

I won't say her name but her mom has Alzheimer's and somebody had passed away that they cared about and you know, someone mentioned the name and a conversation and her mom goes, what happened? I'm gonna call him Frank. What happened to Frank? Well, mom he died. He died? She started crying and everyone's upset and then like three minutes later somebody else had mentioned Frank. What happened to Frank? Oh mom, he died. He died? Crying all over again and this kept going on to the point where they're laughing. They're laughing because you have to you have to laugh. And so the poor mom is probably like

J Smiles: 30:21

Right, Right.

Hilary: 30:22

But when when the same thing happens four or five times you have to laugh about it or you're not, you can't get through it. And then I mean, you change obviously, you learn you learn, not to mention the Frank anymore. But yeah.

J Smiles: 30:35

Right, allowed to say that anyone died.

Hilary: 30:38

Yeah.

J Smiles: 30:38

Ever. Like to my mom, everybody's alive. Everybody that she ever cared about. Jesus is alive. Martin Luther King is alive. Mother Teresa is alive. Pope John Paul the second is alive. Literally. Anybody? Yeah, do whatever. They're down the street. She says I'm like, Oh, mom, dad, my father's been, he died in 2012. My mom, she's like your father. He's at work. It could be three o'clock in the morning, three o'clock in the afternoon. He's at work. She said, Oh, that's good. My mother believes in work. Anybody can, you can always be at work but you cannot be is on vacation. I learned t at the hard way in the beginning of, beginning of her Alzheimer's If I would say, oh mom, I'm so tired. Oh, my god, I thi k I need a vacation. Vacati n? We don't have time for a vaca ion. Do you know how hard it is to get? You are a black woman i the United States. A vacatio ? You don't have. I'm like Wow. Now you can take a nap. If you'r tired from working or you ta e a nap and then get up and wor some more. So but I do I und rstand what you mean. And I can ecall those moments, beginning o as I'm so happy you said tha about when your mom said thing and you're thinking, oh, ell is this really some embedded things that she filtered? When he, when her brain was healt ier and she wouldn't have said t

Hilary: 32:06

They're just in the store. me because I'm her child. L ke, I don't love you right now I love you but I don't real y like you. It's kind of lik , you know, when people are in briated, or like, just totally wasted and you're like, oh, the ruth comes out when you're drun . And it's like, oh god, lik is her brain drunk right now a d what mom is telling me is th truth? Oh, yeah, all those kin s of things are really just, y u know, you have to start balan ing them as the caregiver and it seems like you have a really g od, what I call your caregiver c ew, which, as I state all he time in the podcast, I sprin led throughout as many episodes s possible. It may not in lude your best friend, or who y u would say is your absolute bes friend in the world wh you tell your spiritual, fina cial, romantic professional woes to. But having your ca egiver crew is essential, in my opinion, to your emotiona health along this journey. Those are the people who will guide you and uplift you nd sometimes they're not even ca egivers. But they have a knack f r listening and not getting f ustrated by this really wonky, uncommon ass life that we lead. o it's cool when you.. Yeah.

J Smiles: 33:40

When you find those people.

Hilary: 33:42

You know, I had one, t e ones who can make you laugh a d make light of things. I had ne friend where, well you know in the beginning of Alzheimer's it's the hardest because you entire life is shifting an everything you knew is changing and it's, I would say for m emotionally that was one of th hardest times. And then I had a friend who texted and he said, so you beating your mom in memo y games yet? And just, like me, now that's my sense of humor. I knew like his heart, he has su h a big heart and he cares so deeply and I knew this came fr m a p

J Smiles: 34:23

Absolutely.

Hilary: 34:24

And you know, so so I was able to it made me laugh. And you know, I have two friends like that who can find humor in anything and just make me laugh at situations and that helps alot.

J Smiles: 34:35

That helps a ton. Have you come up with any caregiver, like what I would call a caregiver hack? Something that you're like, I use this as a shortcut. This is how...

Hilary: 34:50

Agree and distract.

J Smiles: 34:52

Agree and distract.

Hilary: 34:53

You hear that from other people. I didn't come up with it but agree and distract. I mean that is it's the life saver because whatever she's mad about right now, in 15 minutes, she's not going to remember it. So I can argue with her all I want. And in the beginning you do, that's just naturual. But, no mom that's not what happened. Yes, it is. Mom. No mom really, it's not. Yes it is. So now it's like, you know, she could tell me she saw a purple cow. Great. Really? Where? Where was it? In the living room? Oh, that's great. That sounds really exciting. That's awesome and you just move on with the conversation.

J Smiles: 35:26

That's right. I love it. Here, you get Cheers.

Hilary: 35:34

I wish I had been able to do that right away. But more it took me a little while to really embrace the agree and distract and...

J Smiles: 35:41

Honey, don't ,don't beat yourself up about that. If you got there at all, you said your mom's diagnosis was two years ago. The fact that you are there already, you are ahead of the game. It, that is one of the toughest things to do as a caregiver. I've been a caregiver for basically 10 years with my mother and if you count the time that I was a part of the, my extended? Well, a part of the family circle with my grandfather, I guess I've been doing this for more than 20 years. And that is the most difficult thing is really saying, okay, she cannot help it. As a loved one, it's our own denial that this disease has taken this person who has represented strength and integrity and protection and intelligence, independence, and all of a sudden, they can't remember where home is or their age or the year and you, and you, we don't want to believe that. Our pushback is an indication that we're fighting for them not to change that quickly. And your acceptance that wow, the disease has gotten mom faster than I want. Just means that you, you were able to battle denial a little bit quicker than most. So don't beat yourself up too bad about that because the fact that some people don't ever get there. I know caregivers who are 5, 6, 7 years in the game, and they still want to go toe to toe with their loved one and say I just told her and I'm like, wow, is that, is that your retort? I just told her. And so what?

Hilary: 37:35

She doesn't remember.

J Smiles: 37:36

And so what?

Hilary: 37:36

She doesn't remember anything you just told her.

J Smiles: 37:37

And you can tell her again and you're both going to be upset and we're going to get nowhere with this.

Hilary: 37:43

Yeah.

J Smiles: 37:44

What have you found most rewarding about being a caregiver?

Hilary: 37:50

So, you know, my mom and I are both a bit strong willed.

J Smiles: 37:56

You said, you said that a bit low Hillary, your voice, your voice, your voice.

Hilary: 38:00

Maybe.

J Smiles: 38:02

You started whispering my voice was...

Hilary: 38:05

So you know, we were a bit, and I definitely learned stubbornness from her and independence and so needless to say, we would butt heads a lot. And that was hard but we have both learned through this to actually be a lot softer. And believe it or not, we're actually for the most part getting along better now then, then we had. I can't explain exactly why I don't, I'm sure it's on both parts. I'm sure it's not just her and I'm sure it's not just me. But there's a more of a caring and tenderness there that I think probably we both always felt but weren't able to express very well.

J Smiles: 38:50

That's amazing and extremely touching. What advice would you give a new caregiver? Something that you haven't shared with us, you definitely have dropped a few golden nuggets in the interview already. If there's anything else you would share with a newbie.

Hilary: 39:10

Power of attorney, power of attorney and power of attorney.

J Smiles: 39:13

There it is. Get it three times.

Hilary: 39:15

Get it right away when you're first diagnosed when they can still go and sign the papers and go do everything because if you don't it's a nightmare. Actually, I saw both sides but because my mom was very smart and had my brother power of attorney years ago, but it was before she lived near me, so we had to get it switched. So while right away, it was fine. It was great everything but by the time we had to get it switched to me, she was a little bit too far gone so we had to get the doctor's approval and we had to get the lawyers approval and we had to get you know, just all these approvals to make sure she was still coherent enough because she had the diagnosis to be able to make the decision to add me as, we weren't even taking away from brother, we're just adding me.

J Smiles: 39:59

Right.

Hilary: 39:59

Because she lives near me so I could make decisions and I could pay their bills and things like that.

J Smiles: 40:04

Right.

Hilary: 40:05

So just logistically, it sounds really simple but power of attorney is one of the very, very, very first things you should do.

J Smiles: 40:13

I 1000 million, gazillion, trillion, bazillion, pillion percent agree because when you are grappling with the emotional acceptance of this disease and what it means to the immediate change in your life and your ello's life, having the legal stuff handled, and anything that can be crossed off, logistically, medically, is just, just gives your brain a chance to just try to let the dust settle and wrap your mind around, what in the hell is next? So 100% and in that case, you're saying you and your brother, and your mom are all on the same page but you still have to go through these hoops just to get all your ducks in a row, so to speak.

Hilary: 41:13

Well, I have to pay all her bills now. And I have

J Smiles: 41:16

Yeah.

Hilary: 41:16

It's little stuff you have to call the phone company to get things changed or add that this or that or whatever the daily day to day life that you do normally. And you call up and Hi, I'm so and so and they'll ask you the questions and all that without a power of attorney can't do anything.

J Smiles: 41:30

You can't do anything and because she is still with you on Earth, which is great, but she can't speak clearly to say yes, this is my daughter and I want her to pay my bills because if you put her on the phone or take her into the bank you don't really know what she's going to say. So, I remember that with my mom. They said well, initially, well J, just bring your mom in and I was like, yeah, not today, right? Today is, today is not the best day to bring her in because I don't really know what the hell she may say. She may say, hey, it's stick up. I don't know this girl, she is trying to steal my money. You know? Police Police. So to your point, get it done, get it done; fast and furious. Thank you so much, Hillary. This has been fantastic.

Hilary: 42:21

Well, thank you for having me.

J Smiles: 42:22

You have shared. I knew it was going to be great because man the universe through enough speed bumps in our way.

Hilary: 42:31

Yes.

J Smiles: 42:32

But we stayed the course, we stayed the course. Thank you so much for joining us. You are welcome to come back anytime.

Hilary: 42:40

Well, thank you. Yeah, if it helps just one person listening. It's worth it. Right.

J Smiles: 42:44

That's exactly why we are here. Okay, you have a good one.

Hilary: 42:51

Thank you. You too. The snuggle up, Number one- If you have a senior that you love and care about, let's say anybody over 60 years of age, go visit them. I'm talking about a 24 hour visit. Where you got to spend the night wake up and see how they go about their day. Let them drive you to church. What route did they take? Do they seem to be lost? A little bit confused? Are they taking their medicine? What are they eating? Don't get to the house and jump in cleaning and going to the grocery store, just observe. Are they really okay and managing well, living independently? Number two- Agree and distract. I love it. It is an amazing concept on how to interact with the person who has dementia. Alzheimer's is very tricky. You hear the term, yeah, redirect them, but that is such a nebulous thing. What does redirect? But agree and distract, absolutely, we can do that. No matter what your ello is saying, agree with them and then distract them and move on to the next subject. Number three- Get your legal documents in order, people. I could mention this literally every single episode, power of attorney and a will for your parents, your grandparents, the siblings, your spouses, anybody that you love and care about that's over 40 years old. I think you ought to have everything I just mentioned. Number four- Join me every Monday night for a video broadcast, a vodcast. It's a video podcast. It's all about caregiving, but a completely different topic than we have here. Same title Parenting Up in partnership with getvokal.com. Follow us on social media. Parenting Up has a presence on YouTube, Facebook and Instagram with unique caregiving content. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends, and truth. Pretty, Pretty please with suga on top, share and review it too I'm a comedian, Alzheimer's i heavy, but we ain't got to be